A Medical Zebra

Brooke Tully
September 02, 2015

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“Imagine being fast asleep only to be woken by the sound of a herd of hooves trampling right outside your room. Of course you think of horses. You don’t think zebras. Well – in the world of medical diagnosis, pulmonary hypertension is a zebra. There’s so many other conditions that seem more likely given the symptoms.”

That’s the explanation Robyn was given when her 16-and-a-half year old daughter Bridget finally – at long last – was given a definitive answer as to why she was always short of breath, why she had no energy, why she suffered dizzy spells, and why walking upstairs was nearly impossible.

She had pulmonary hypertension – a progressive and terminal illness with no cure.

The condition is caused by changes in the cells that line the pulmonary arteries. These changes cause extra tissue to form, eventually narrowing or completely blocking the blood vessels, making the arteries stiff and narrow. This makes it harder for blood to flow, raising the blood pressure in the pulmonary arteries. Think of a garden hose with a kink in it; there’s just not enough blood able to get to where it needs to go at the rate it normally takes to get there. Drugs can be administered but everyone responds differently. Even for those who do respond fairly well, the drugs over time lose their impact and eventually the person is back to square one. No treatment.

Bridget and her parents are no strangers to hospital. She spent the first seven months of her life getting treated for a congenital heart disorder. It is for this reason her parents decided not to have any more children – they didn’t want to bring someone else into the world when they knew they faced so many years ahead in hospital, but more importantly they didn’t want to risk a sibling also being born with the condition.

Robyn rides when she can. It’s the best way to deal with the pressures and anxiety that hang over any parent whose child receives a terminal diagnosis. The endorphins a spin class releases help her keep going. She says that Bridget is often a lot more positive than she herself, but riding helps with that.

A spin class is a long, long way from a 100km outdoor riding event, but that’s exactly what Robyn’s doing this year.

She plans to enter the Brisbane to Gold Coast Cycle Challenge and ride in a Pulmonary Hypertension Australia Association (PHAA) t-shirt. She hopes other riders participating will ask her questions. If they finish the ride discovering this condition is out there – and can befall anyone – then it’s 100km well spent in Robyn’s mind. Bridget’s existing heart condition has been linked to her pulmonary hypertension, but it can present in anyone for no known reason whatsoever. As Robyn says, none of us know what’s behind the door.

And if riding in the event leads to some donations, then even better.

As Robyn explains, because it is such a low-profile terminal illness it doesn’t have the backing or community awareness to bring in big dollars. It’s up to the PHAA – all volunteers either with the condition or related to a family member who is affected – to scrape together what they can. Indeed, it was only ten years ago the Association’s CEO mortgaged her family home to fund drugs from the US to treat her son, who has since passed away from the illness.

From Robyn’s insights through the PHAA, she personally believes the younger the person diagnosed, the less remaining time they have. It’s why this ride and this constant daily battle to raise awareness and funds for further research are, quite literally, a matter of life or death.
Bridget of course can’t do the ride, but that doesn’t stop her achieving what she can.

For a week prior to our catch up, Robyn and Bridget were in hospital dealing with a particularly hard blow to her system (Robyn stays overnight when Bridget is admitted). They’re both just settling back into home routine and trying to find some normality, so hopefully Robyn will get to a spin class soon and Bridget can resume some of the volunteer work she does for Police Prosecutions and ROPE - Redcliffe Opportunities for People Enhancements.

If you’re planning to ride this year’s Gold Coast to Brisbane, click on the banners that appear around this article for more information. Keep an eye open for Robyn and be sure to ask her some questions – what she’s doing for her daughter and for a little-known illness is remarkable and their story needs to be heard far and wide.